An exhausted Doncaster mum had to go nine nights without sleep, because of a shortage of carers to help look after her seriously ill daughter.
Lindsey Cook’s daughter Abigail needs constant care – but even though the family was promised 163 hours of care support per week from the NHS, in recent weeks she has been receiving only 98.
It means Lindsey is having to watch over her daughter day and night, at the expense of sleep.
NHS bosses say they are aware of the issue and are talking to her about the problem to try to find a solution.
Abigail, aged 13, of Walnut Avenue, Tickhill suffers from Battens Disease, a rare degenerative illness. It means she can no longer walk or talk, and she has suffered a stroke which has paralysed her.
She is now fed through a tube and frequently suffers from chest infections and respiratory problems.
Her condition now means that she needs to be monitored right through the night.
She has been told it is because there is a shortage of carers.
She said: “I understand the company who has been assigned to us under the local care system has not been able to get the carers. It means its left to the parents to provide the care.
“I’m supposed to get 163 hours care a week for Abigail. The best I’ve been getting recently is 98. Over a recent period, I had three night time carers in 15 nights. I’m supposed to have seven.
“Abigail needs to be monitored all through the night. Her condition means she can have seizures, choking fits, and respiratory problems. She has scoliosis – a curved spine – which means she needs to be re-positioned to make sure her internal organs don’t get squashed.
“If you don’t sleep at night you can’t work as well during the day. I recently did nine nights in a row. I’m suffering psychologically and emotionally.”
Dr David Crichton, Chair, Doncaster Clinical Commissioning Group said: “Doncaster CCG is aware of the concerns raised by Ms Cook.
“We will continue to work with Ms Cook and her family to ensure that high quality care is provided to meet Abigail’s needs. The CCG is making arrangements to meet with Ms Cook to discuss her concerns in detail and will continue to work with her in relation to Abigail’s day to day support needs and service provision.”
Abigail’s problems began when she suffered a chronic seizure and she stopped breathing while on holiday in Turkey at the age of six.
Tests at Doncaster Royal Infirmary came back negative but Abigail soon developed ticks, a stammer, and became unable to dress and eat for herself suffering from dementia-like symptoms.
Following an MRI scan at Sheffield’s Royal Hallamshire Hospital which showed shadows on her brain, she was referred to Great Ormond Street Hospital and was eventually diagnosed with Batten Disease.
The community rallied round Abigail, contributing to a ‘wish list’ committee with fundraising events, for ‘bucket list’ events including a trip to Florida for her.